When to expect a reoccurance of large B cell lymphoma and what is the treatment?

[Dlindquist54]

When I first got on a supportive chat I asked, how long do you get before a reoccurance when you are expecting a reoccurance of lymphoma. I was told the lymphoma I have is treatable, probably not curable. I'm back to oncology visits every 3 months. Chemotherapy finished in May or June or 2013. A woman then told me to expect 7 to 9 years. I'm at that mark now. So that is all my questions? Has anyone here experienced this? What do you take for treatment? How hard do they have to look for the reoccurance? I would like to avoid the reoccurance so what is your best ways to avoid reoccurance?

[pollyg2016]

Hi Dlindquist54, Congratulations on not having an reoccurance for so long. In answer to your question, I think it depends on the individual. My partner has Mantel Cell Lymphomia, diagnosed in 2014. He has relapsed three times. He had stem cell transplant and was OK for 1 year, then he relapsed. Then he was put on Ibrutinib and his longest period was 2years. That stopped working in December 2019, he was put on Rituximab and Bendamustine for six months. Unfortunately, that also had no effect. He is now about to embark on the CAR-T therapy in October. This is just showing that there is no guarantee how long each person will be in remission. The fact that you've been in remission is fantastic news and long may it continue. I sure it's hard not to think of it, but try to live your life to the best of your ability, healthy and full.

[Dlindquist54 in reply to pollyg2016]

Thank you for sharing information about your husband and you are right, I work on living each day as it comes. And I so appreciate when I am feeling good. I know it can always be worse and I have it pretty darn good most days. I will keep you and your husband in my prayers.

[muttydog]

I am the same as you had no treatment since 2013 not in remission but stable. Getting a bit anxious xx ♥️

[Dlindquist54 in reply to muttydog]

It did help me to think it would probably be 7 - 9 years before a reoccurance. Then the doctor said it wouldn't be full chemo but probably just one chemo drug?? What are you doing as preventative... understanding that no one really knows what is preventative!

[Andilynn]

Hello,

I had my last maintenance treatment for SMZL at the end of 2016. No one told me it would resurface in a certain length of time. In fact, one doctor said it may never return - I’m going with that.

[Dlindquist54]

Apparently there are like 100 varieties of lymphoma and I just happen to have the type that they say will reoccur. On a lymphoma site someone said it appears to be about year 7-9. Not sure if this was the site or not. That is where I am at, so just wondering if anyone else has experienced this with the same large B lymphoma of the reoccurring type. A friend of mine that had breast cancer said, I've had cancer once so I think my odds of having cancer again are higher than the average persons. I think she was trying to make me feel better... like we all can be reoccurring?

[Lovedogs47]

Well after being on the watch list to finally getting treatment, I was told this is not curable. I go for a scan 9/11 to see if chemo worked & if so I was told I could either get an infusion once every 3 months or wait for it to grow again & do the whole regimen again. I think I'm gonna do the once every 3 months so I'm not left waiting to get sick enough to start treatment again! That was hell! Hope this helps!

[Lovedogs47]

I'm sorry i forgot to mention my doc said mine would probably come back in a yr or 2???? Who knows! I was also told in the beginning of my journey its very slow growing & may not grow & lay dormant. Well 1 yr later its huge!

[oncloudnine]

I had mediastinal large B cell lymphoma in 2016. I have been in remission for 3 1/2 years. I wish you the best and hope your lymphoma and mine and all that are in remission from B cell lymphoma remain in remission permanently.

[Maltipoo]

In 2015 I was diagnosed with Mantle Cell Lymphoma for which they say there is no cure.

Had chemo and stem cell transplant. My best way to avoid reoccurrence? Radically changed my diet. Used to eat SAD diet (standard American Diet). I was eating bagles, butter, hot dogs, hamburgers, fries, pizza, ice cream, cookies, little fruit and vegetables. Now I eat a whole food plant based diet. No meat, no chicken, no fish, no eggs, no dairy. I eat vegetable, fruit, legumes. Every day have some green tea, turmeric, berries, onions, greens, mushrooms, beans, nuts or seeds. Eat cruciferous vegetables like broccoli, cauliflower, cabbage, and also sweet potatoes. I also gave up all gluten. Also get daily exercise. Walk, play tennis, handball. Find religion. Get a dog! Get the following books from the library: Dr Michael Greger's book, "How Not to Die", Kelly Turner's book, "Radical Remission", Dr Joel Fuhrman's book, "Super Immunity" and T Colin Campbell's book, "The China Study".

Peace and Good Health!

[Dlindquist54]

Thank you. I've been on a version close to Fuhrmans plan. Haven't read super immunity though. I will look for that and the others. I was told recently to go gluten free. It's only been a few months now.❤

[Maltipoo]

It has been almost 2 years since I radically changed my diet. I am 65 and feel better than I have ever felt. Dr Greger's book " How Not to Die" has a very good chapter on blood cancers. Studies have shown that people on a vegetarian diet reduce their chance of getting lymphoma by 50%. In Kelly Turner's book "Radical Remission" people who went into long term remission all did 9 things. As for diet, they all gave up meat (beef, chicken, pork) wheat, sweets, and dairy. Dr Fuhrman talks about eating GBOMBS (greens, beans, onions, mushrooms, berries, seeds) for super immunity. T Colin Campbell's book "The China Study" is a classic. The people of rural China have a fraction of the cancers we have in the US because of their whole food plant based diet low in animal products. He shows how a diet high in animal protein can turn cancer genes on.

Also try to exercise daily. A good brisk walk in nature is great for the immune system.

Only time will tell if I am on the right track but there are no downsides to eating healthy.

Good luck!